By MIKE SHIELDS
KHI News Service
TOPEKA — Members of a council advising the state on how to govern the digital exchange of patient health information met again Tuesday to talk about ways to regulate the so-called “secondary use” of the data.
As more medical providers feed their patient information to the two exchange networks operating in the state, the network managers are expected to receive more requests for access to the data from researchers, marketers, drug companies and others.
Kansas is an “opt-out” state, which means patients may have their information shared or exchanged over the networks among their various participating medical providers unless they sign a form prohibiting it
Data mining opportunities
That information, aggregated from thousands of participating patients and stripped of individual identifiers, is expected to be rich in data mining opportunities. For example, researchers might use the data to determine how many people in the state are being treated for diabetes and what treatments have proven most effective. Or drug companies could use the information for product development.
The KanHIT Advisory Council, which held its first meeting in February, spent about three hours today discussing the topic before agreeing to form working groups to study whether sale of the information might generate enough money to help sustain the operations of the non-profit networks and to determine where the authority should reside for releasing the information and under what circumstances.
The networks thus far have been funded by user fees, mostly from doctors, hospital and other medical providers, and federal grant dollars passed through the Kansas Department of Health and Environment, the state agency that is charged with certifying the networks.
Dr. Joe Davison, the Wichita physician who chairs the KanHIT Advisory Council, proposed that each of the networks handle the requests for information on their own in accordance with policies to be determined by the council and adopted by KDHE as opposed to having KDHE or some other third party manage the requests.
He suggested that the networks could use Institutional Review Boards, similar to those used by medical schools and other entities, to determine case by case whether the data should be released and for what price, if any.
Davison said he thought doctors should pay nothing since they had already spent money purchasing and installing the electronic health record systems that undergird and feed the networks. Researchers focused on public health issues should get the data at cost. Others, including commercial interests, he said, should pay “cost plus.”
“I am very concerned about sustainability” of the networks, Davison said, noting that the sale of data for secondary use might help the network finances.
‘Robust’ analytics predicted
The networks, or Health Information Organizations, for the most part are still busy connecting doctors and other medical providers for purposes of “primary use,” which means exchanging patient information to provide direct patient care. But there have been some requests for “secondary” use of the data being collected and that is expected to become more common as the use of digital health records expands and matures.
“I have no doubt the HIOs are going to have very robust analytic capabilities in a few years,” Davison said.
The networks already are providing various data to KDHE for public health efforts, according to Laura McCrary, a council member and executive director of the Kansas Health Information Network, one of the two, state-certified HIOs in Kansas.
“There are 30 different data sets we are required to submit to KDHE,” McCrary said. “Those are pretty robust data sets and we’re doing that already.”
The council is staffed by Michael McPherson, a KDHE health information technology specialist.
Davison asked him to put the work groups together so that the council could meet again in four or five months to review the recommendations they come up with.
LACIE, is the other Kansas-certified HIO.
Mike Dittemore, its executive director, told KHI News Service that the organization already is financially “sustainable” for at least the next 10 years based on the fees it collects from its provider members and that revenue from the sales of secondary-use data more likely would be a future rather than an immediate possibility.